With the End in Mind

by Kathryn Mannix

  Sometimes I was the second fiddle, listening to a more experienced doctor talking to families about illness, death, why the drugs hadn’t worked, or why an infection had torn the person away just as their leukaemia was responding. The family members nodded bleakly, sipped tea, dripped tears. Sometimes I was the only doctor available if others were in clinics, or it was after hours, and sometimes I brewed the tea-with-sympathy myself, finding the familiar routine a comfort, noticing the details of the flowery, gilded china cups and saucers that Sister provided for these most special visitors, before taking a deep breath and entering the room to give the worst news in the world.

  To my surprise, I found these conversations strangely uplifting. Families were rarely totally unprepared: this was a ward for people who had life-threatening illnesses. During these conversations I would learn so much about the deceased person, things I wished I had known while they were alive. Families told stories about their gifts and talents, their kindnesses and interests, their quirks and peculiarities. These conversations were almost always in the present tense: there was a sense of their loved one still being present in some way, perhaps while the body was still tucked in the same bed, or was being cared for somewhere else in the hospital. And then they would check themselves, correct the tense, and begin to rehearse their steps into the huge loss that was gradually, terribly, declaring itself.

  Some time during my first six months I had to tell an elderly man that his wife had died. She had died suddenly, and the cardiac arrest team had been called. As is customary, her husband had been telephoned and asked to come as soon as he could, no further details given. I found him standing on the ward, outside her room, looking at the unfamiliar screen across the door and the sign saying ‘Please do not enter, please see the nursing staff.’ The crash team had departed, and the nurses were occupied with their drugs round. I asked if I could help, and then saw the bewilderment and fear in his eyes.

  ‘Are you Irene’s husband?’ I asked. He moved his head to say yes, but no sound came out of his mouth.

  ‘Come with me, and let me explain,’ I said, leading him to Sister’s office and to yet another of those conversations that change people’s lives. I don’t remember the detail of the conversation, but I remember becoming aware that, with the death of his wife, this man now had no remaining family. He seemed frail and lost, and I was concerned that he might need support in his bereavement. Had I been more aware then of the wonderful contribution that can be made by GPs and primary care services, I might simply have asked his permission to let his GP know that his beloved wife had just died, but I was inexperienced and in an unexpected situation: I had discovered him outside his wife’s room while I was in the middle of administering the midday intravenous antibiotics for the ward. I hadn’t prepared myself for a bereavement discussion.

  As usual when terminating these sad conversations, I assured him that I would be happy to talk to him again if he found that he had further questions as time went by. Although I always said this, and I truly meant it, families never did come back for more information. And then I acted on impulse: I gave Irene’s fragile-looking husband my name and telephone number on a piece of paper. I had never given out written contact details like this before, and his apparent indifference as he screwed the scrap of paper into a ball and pocketed it seemed to indicate that this might not be a helpful contribution.

  Three months later I was working at a different hospital, now as a junior on a surgical ward, when I received a phone call from the ward sister of my previous ward, she of the tray-with-cloth and the gilded china. Did I remember that patient called Irene, she asked. She had had a call from Irene’s husband, and he was most insistent that he make contact with me. She gave me a number, and I called him.

  ‘Oh, thank you for calling me back, doctor. It’s so nice to hear your voice…’ He paused, and I waited, wondering what question might have occurred to him, hoping I would know enough to answer it.

  ‘The thing is…’ he paused again. ‘Well, you were so kind to say I could phone you… and I didn’t know who else I could tell… but, well… the thing is, I finally threw Irene’s toothbrush out yesterday. And today it isn’t in the bathroom, and I really feel she is never coming back…’ I could hear his voice breaking with emotion, and I remembered his bewildered face, back on the ward the morning she died.

  The lesson was coming home to me. Those bereavement conversations are just the beginning, the start of a process that is going to take a lifetime for people to live alongside in a new way. I wondered how many others would have called, had I given them a name and a number in writing. By now I was more aware of the network of care that is available, and I asked Irene’s husband for permission to contact his GP. I told him I was honoured that he felt he could call me. I told him that I remembered Irene with such fondness, and that I could not begin to imagine his loss.

  Towards the end of my first year after qualification, I found myself reflecting on the many deaths I had attended in that year: the youngest, a sixteen-year-old lad with an aggressive and rare bone-marrow cancer; the saddest, a young mum whose infertility treatments may have been responsible for her death from breast cancer just before her precious son’s fifth birthday; the most musical, an elderly lady who asked the ward sister and me to sing ‘Abide With Me’ for her, and who breathed her last just before we ran out of verses; the longest-distance, the homeless man who was reunited with his family and transported the length of England over two days in an ambulance, to die in a hospice near his parents’ home; and the one that got away–my first cardiac arrest call, a middle-aged man who was post-op and stopped breathing, but who responded to our ministrations and walked out of the hospital a well man a week later.

  This is when I noticed the pattern of dealing with dying. I am fascinated by the conundrum of death: by the ineffable change from alive to no-longer-alive; by the dignity with which the seriously ill can approach their deaths; by the challenge to be honest yet kind in discussing illness and the possibility of never getting better; by the moments of common humanity at the bedsides of the dying, when I realise that it is a rare privilege to be present and to serve those who are approaching their unmaking. I was discovering that I was not afraid of death; rather, I was in awe of it, and of its impact on our lives. What would happen if we ever ‘found a cure’ for death? Immortality seems in many ways an uninviting option. It is the fact that every day counts us down that makes each one such a gift. There are only two days with fewer than twenty-four hours in each lifetime, sitting like bookends astride our lives: one is celebrated every year, yet it is the other that makes us see living as precious.

  French Resistance

  Sometimes, things that are right in front of our noses are not truly noticed until someone else calls them to our attention.

  Sometimes, courage is about more than choosing a brave course of action. Rather than performing brave deeds, courage may involve living bravely, even as life ebbs. Or it may involve embarking on a conversation that feels very uncomfortable, and yet enables someone to feel accompanied in their darkness, like ‘a good deed in a naughty world’.

  Here’s Sabine. She is nearly eighty. She has a distinguished billow of silver-white hair swept into a knotted silk scarf, and she wears a kaftan (the genuine article, from her travels in the Far East in the 1950s) instead of a dressing gown. She is in constant motion in her hospice bed, playing Patience, applying her maquillage, moisturising her sparrowesque hands. She drinks her tea black and derides the ‘You call that coffee?’ offered by the beverages trolley. She has a French accent so dense it drapes her speech like an acoustic fog. She is the most mysterious, self-contained creature we have encountered in our newly built hospice.

  Sabine has lived in England since 1946, when she married a young British officer her Resistance cell had hidden from Nazi troops for eighteen months. Peter, her British hero, had parachuted into France to support the Resistance. He was a communications specialist, and had helped them to buil
d a radio from, by the sound of it, only eggboxes and a ball of string. I suppose he may also have brought some radio components in his rucksack, but I dare not ask. Forty years later, her accent sounds as though she has just stepped off the boat at Dover, a new bride with high hopes. ‘Peter was so clever,’ she murmurs. ‘He could do any-sing.’

  Peter was very brave. This is not in doubt: Sabine has his photograph and his medals on her bedside table. He died many years ago, after an illness that he bore with characteristic courage. ‘He was never afraid,’ she recalls. ‘He told me always to remember him. And I do, naturellement, I talk to him every day’–and she indicates the photograph of her handsome husband, resplendent in dress uniform and frozen in monochrome at around forty years of age. ‘Our only sadness was that the Lord did not send us children,’ she reflects. ‘But instead we use our time for great travel and adventures. We were very ’appy.’

  Her own medal for courage is pinned to her chest on a black and red ribbon. She tells the nurses that she has only taken to wearing it since she realised that she was dying. ‘It is to remind me that I too can be brave.’

  I am a young trainee in the new specialty of palliative medicine. My trainer is the consultant in charge of our new hospice, and Sabine loves to talk to him. From his discussions with her, it emerges that he is bilingual because his father was a Frenchman, and also a Resistance fighter. He occasionally has conversations with Sabine in French. When this happens, she sparkles and moves her hands with animation; the symmetrical Gallic shrugs between them amuse us greatly. Sabine is flirting.

  And yet, Sabine is keeping a secret. She, who wears her Resistance Medal and who withstood the terror of the war, is afraid. She knows that widespread bowel cancer has reached her liver and is killing her. She maintains her self-possession when she allows the nurses to manage her colostomy bag. She is graceful when they wheel her to the bathroom and assist her to shower or bathe. But she is afraid that, one day, she may discover that she has pain beyond her ability to endure, and that her courage will fail her. If that should happen, she believes (with a faith based on 1930s French Catholicism mixed with superstition and dread) she will lose her dignity: she will die in agony. Worse: her loss of courage at the end will prevent her forever from rejoining her beloved husband in the heaven she so devoutly believes in. ‘I will not be worthy,’ she sighs. ‘I do not have the courage that I may require.’

  Sabine confesses this deep-seated fear while a nurse is drying those silver tresses after a shower. The nurse and Sabine are looking at each other indirectly, via the mirror. In some way, that dissociation of eye contact, that joint labour at the task in hand, enabled this intimate conversation. The nurse was wise; she knew that reassurance would not help Sabine, and that listening, encouraging, allowing the full depth of her despair and fear to be expressed, was a vital gift at that moment. Once her hair was dressed, her silk scarf in place and Sabine indicated that the audience was over, the nurse asked permission to discuss those important concerns with our leader. Sabine, of course, agreed: in her eyes our leader was almost French. He would understand.

  What happened next has lived with me, as if on a cinema reel, for the rest of my career. It formed my future practice; it is writing this book. It has enabled me to watch dying in a way that is informed and prepared; to be calm amidst other people’s storms of fear; and to be confident that the more we understand about the way dying proceeds, the better we will manage it. I didn’t see it coming, but it changed my life.

  Our leader requested that the nurse to whom Sabine had confided her fear should accompany him, and added that I might find the conversation interesting. I wondered what he was going to say. I anticipated that he would explain about pain management options, to help Sabine be less worried about her pain getting out of control. I wondered why he wanted me to come along, as I felt I was already quite adept at pain management conversations. Ah, the confidence of the inexperienced…

  Sabine was delighted to see him. He greeted her in French, and asked her permission to sit down. She sparkled and patted the bed, indicating where he should sit. The nurse sat in the bedside chair; I grabbed a low stool and squatted down on it, in a position from which I could see Sabine’s face. There were French pleasantries, and then our leader came to the point. ‘Your nurse told me that you have some worries. I am so glad you told her. Would you like to discuss this with me?’

  Sabine agreed. Our leader asked whether she would prefer the conversation to be in English or French. ‘En Anglais. Pour les autres,’ she replied, indicating us lesser beings with benevolence. And so he began.

  ‘You have been worrying about what dying will be like, and whether it will be painful for you?’

  ‘Yes,’ she replied. I was startled by his direct approach, but Sabine appeared unsurprised.

  ‘And you have been worrying that your courage may fail?’

  Sabine reached for his hand and grasped it. She swallowed, and croaked, ‘Oui.’

  ‘I wonder whether it would help you if I describe what dying will be like,’ he said, looking straight into her eyes. ‘And I wonder whether you have ever seen anyone die from the illness that you have?’

  If he describes what? I heard myself shriek in my head.

  Sabine, focused and thoughtful, reminisced that during the war a young woman had died of gunshot wounds in her family’s farmhouse. They had given her drugs that relieved her pain. Soon after, she stopped breathing. Years later, Sabine’s beloved husband had died after a heart attack. He collapsed at home and survived to reach hospital. He died the following day, fully aware that death was approaching.

  ‘The priest came. Peter said all the prayers with him. He never looked afraid. He told me goodbye was the wrong word, that this was au revoir. Until we see each other again…’ Her eyes were brimming, and she blinked her tears onto her cheeks, ignoring them as they ran into her wrinkles.

  ‘So let’s talk about your illness,’ said our leader. ‘First of all, let’s talk about pain. Has this been a very painful illness so far?’

  She shakes her head. He takes up her medication chart, and points out to her that she is taking no regular painkillers, only occasional doses of a drug for colicky pain in her abdomen.

  ‘If it hasn’t been painful so far, I don’t expect it to suddenly change character and become painful in the future. But if it does, you can be sure we will help you to keep any pain bearable. Can you trust us to do that?’

  ‘Yes. I trust you.’

  He continues, ‘It’s a funny thing that, in many different illnesses that cause people to become weaker, their experience towards the end of life is very similar. I have seen this many times. Shall I tell you what we see? If you want me to stop at any point, you just tell me and I will stop.’

  She nods, holding his gaze.

  ‘Well, the first thing we notice is that people are more tired. Their illness saps their energy. I think you are already noticing that?’

  Another nod. She takes his hand again.

  ‘As time goes by, people become more tired, more weary. They need to sleep more, to boost their energy levels. Have you noticed that if you have a sleep during the day, you feel less weary for a while when you wake up?’

  Her posture is changing. She is sitting up straighter. Her eyes are locked on his face. She nods.

  ‘Well, that tells us that you are following the usual pattern. What we expect to happen from now on is that you will just be progressively more tired, and you will need longer sleeps, and spend less time awake.’

  Job done, I think. She can expect to be sleepy. Let’s go… But our leader continues talking.

  ‘As time goes by,’ he says, ‘we find that people begin to spend more time sleeping, and some of that time they are even more deeply asleep, they slip into a coma. I mean that they are unconscious. Do you understand? Shall I say it in French?’

  ‘Non, I understand. Unconscious, coma, oui.’ She shakes his hand in hers to affirm her understanding.

&nb
sp; ‘So if people are too deeply unconscious to take their medications for part of the day, we will find a different way to give those drugs, to make sure they remain in comfort. Consoler toujours. Yes?’

  He must be about to stop now, I think. I am surprised that he has told her so much. But he continues, his gaze locked onto hers.

  ‘We see people spending more time asleep, and less time awake. Sometimes when they appear to be only asleep, they are actually unconscious, yet when they wake up they tell us they had a good sleep. It seems we don’t notice that we become unconscious. And so, at the very end of life, a person is simply unconscious all of the time. And then their breathing starts to change. Sometimes deep and slow, sometimes shallow and faster, and then, very gently, the breathing slows down, and very gently stops. No sudden rush of pain at the end. No feeling of fading away. No panic. Just very, very peaceful…’

  She is leaning towards him. She picks up his hand and draws it to her lips, and very gently kisses it with great reverence.

  ‘The important thing to notice is that it’s not the same as falling asleep,’ he says. ‘In fact, if you are well enough to feel you need a nap, then you are well enough to wake up again afterwards. Becoming unconscious doesn’t feel like falling asleep. You won’t even notice it happening.’

  He stops and looks at her. She looks at him. I stare at both of them. I think my mouth might be open, and I may even be leaking from my eyes. There is a long silence. Her shoulders relax and she settles against her pillows. She closes her eyes and gives a deep, long sigh, then raises his hand, held in both of hers, shakes it like shaking dice, and gazes at him as she says, simply, ‘Thank you.’ She closes her eyes. We are, it seems, dismissed.